The Journey Beyond - Cleveland Clinic

Pediatric Epilepsy Support Group presents:
Epilepsy Surgery:
The Journey Beyond
The Second Biennial Reunion for our
Post Surgery Epilepsy Patients and their Families
August 1–2, 2008
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Embassy Suites Hotel, Beachwood, Ohio

A message from the Director ...
Dear Friends,
We feel honored and grateful that you entrusted in the hands
of our team, your decision to undertake epilepsy surgery for
your loved one!
We realize that epilepsy surgery is a life-changing step and
yet, the story does not end with the safe return from the
operating room. A new road opens ahead, mostly a better
one, but not without its occasional twists and turns.
On behalf of the Pediatric Epilepsy Support Group, we are
delighted to extend to all of you a special invitation to set
aside a weekend this summer, on August 1 and 2, 2008, to
attend our second post epilepsy surgery reunion. Join us in
celebrating life, in meeting others who have traveled down
the same road, in sharing joy, laughter, stories, thoughts,
feelings, as well as concerns, questions and fears. Thanks
to a combined team effort from the Parent Support Group,
and staff from Pediatric Epilepsy, Neurosurgery, Child Life,
and Rehabilitation Medicine, we are delighted to offer the
opportunity of a weekend to remember!
Deepak Lachhwani, MD
Director, Pediatric Epilepsy Support Group
Cleveland Clinic
2006 Reunion Highlights
In August 2006, more than 50 families from the United
States and abroad gathered together in Cleveland to share
their life experiences after epilepsy surgery.
The atmosphere brimmed with emotion, hugs, laughter
and some tears, as everyone reminisced about the past.
A significant feature of the reunion was the opportunity
for families to attend a symposium with a select group of
invited guest faculty to hear them discuss a variety of topics
on post-surgery issues. During the symposium, patients
and their siblings enjoyed supervised fun-filled activities.
The Pediatric Epilepsy Support Group provides assistance through
our Epilepsy Center, in conjunction with the Neurological Institute
and Cleveland Clinic Children’s 2 Hospital.
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Reunion Schedule
Friday, August 1, 2008
5:30 p.m. Reunion Registration Desk Opens
Arrival, Check-in and Registration
6:30 p.m. Welcome Dinner Reception
Highlights of the Evening
Saturday, August 2, 2008
Breakfast 7–8:30 a.m., Hotel Solarium
Morning Session
8:30 a.m. Surgical Techniques, William Bingaman, MD
9:00 a.m. Seizure Outcome, Prakash Kotagal, MD
9:30 a.m. Management Issues After Surgery, Elaine Wyllie, MD
10:00 a.m. Break
10:30 a.m. Post-operative Seizures, Ajay Gupta, MD
11:00 a.m. Cognitive Function After Surgery, Ingrid Tuxhorn, MD
11:30 a.m. Quality of Life After Surgery, Deepak Lachhwani, MD
12 noon Lunch
Afternoon Session
2:00 p.m. Rehabilitation Resources Exposition
Epilepsy Surgery & Hydrocephalus | Headache
Motor Rehabilitation | Physical Therapy
Occupational Therapy | Psychiatry Issues
Higher Cognitive Functioning
Teen & Sibling Issues
5:00 p.m. Adjourn
Important Information
for our Reunion Participants
• When families check-in on August 1 at the Reunion Registration
Desk, they will receive a folder with details of all the activities
taking place on August 1 and 2 including handouts from the
guest speakers and Rehabilitation Resources Exposition.
• Child care and sponsored activities for our young guests and
participants will only be provided during the morning conference
sessions.
• In the event of a medical emergency, a designated family member
will be called out of the conference. Please have any personal
medications available to be used if needed.
• Sponsored meals include: Welcome Dinner Reception (August 1),
Breakfast, Lunch and Breaks (August 2).
• Expected personal expenses will include registration fees, room
charges at applicable discounted rates, meals outside the conference
timetable and additional travel expenses as per personal preference.
• To ensure safety, access to the hotel pool will be prohibited during
the conference.
• Coordinated post-operative appointments will be offered Wednesday
through Friday prior to the event, and Monday through Wednesday
afterward. Appointments may be made upon individual request, but
certain time and scheduling limitations will apply.
Contact Us
For more information about the reunion, please contact us by phone
at 216.445.9768 or email at pediatricepilepsysupport@ccf.org.
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Hotel Accommodations
Embassy Suites Hotel
Room details:
• Discounted rate: $100.00*
• Bedroom and living room with pull-out couch, kitchenette with
microwave and refrigerator.
• Some handicapped accessible rooms available.
* Please note: Regular room rate is $129. The PESG is supplementing
$29 of the cost of the room.
Room reservations will be the responsibility of each individual family.
• Contact Embassy Suites directly at 800.317.1960 to make your
hotel reservation.
• Early check-in or late check-out is at the hotel’s discretion and
must be arranged on an individual basis by each family desiring
the request.
• Transportation to and from Cleveland Hopkins Airport is available
from the hotel for a fee. Please contact the hotel for details and to
make arrangements.
Special accommodations:
• Complimentary cooked-to-order breakfast in the main lobby
• Complimentary manager’s cocktail reception after 5 p.m. –
snacks and beverage
• Indoor pool and fitness center
Registration Form
_______________________________________________________________________
Name
_______________________________________________________________________
Address
_______________________________________________________________________
City State Zip Code
_______________________________________________________________________
Home phone number
_______________________________________________________________________
Alternate phone number
_______________________________________________________________________
Patient name
YES, we will be happy to attend!
_________ # Adult participants (names): $30.00/adult
_______________________________________________________________________
_______________________________________________________________________
_________ # Children (names & ages): $20.00 (Age 3 to 12 years)
_______________________________________________________________________
_______________________________________________________________________
Payment information:
q Check enclosed, payable to Cleveland Clinic Pediatric Epilepsy Support Group
q Credit Card
_______________________________________________________________________
Name on credit card (Visa or MasterCard) Security Code
_______________________________________________________________________
Credit Card Number Exp Date
SORRY, we are unable to attend this year, but we are happy to pledge our
personal financial support for the Parent Support Group in the amount of $ ________
Please mail registration form, along with payment in the enclosed
envelope, by June 30, 2008. For questions about registration,
please contact Martha Tobin at tobinm@ccf.org or 216.445.3449.
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The Cleveland Clinic Foundation
9500 Euclid Avenue / AC311
Cleveland, OH 44195